Finding Atypical Celiac Disease Early

I stumbled upon what appears (in my estimation) to be a new take on a 3-year-old report.  It is one that hits particularly close to home because some of the atypical symptoms discussed in this Position Statement for the American Gastroenterological Association Institute and accompanying Technical Review on the Diagnosis and Management of Celiac Disease.

The article was put together recently as a feature for Clinical Advisor by medical writer, Carl Sherman. Despite the fact that the actual position statement was published in 2006, I thought I would highlight some of the parts I found most interesting in this latest take on the information.  I hadn’t seen this before and I thought you might enjoy it as well.

Just how atypical are some celiac symptoms?

One thing I found to be interesting is Dr. Murray’s take on people with chronic GI symptoms — and those with ostensible irritable bowel syndrome “especially if symptoms are prominent after eating” should be considered for further evaluation of celiac disease.  I know many people who say they have IBS.  While I’m sure many of them actually do have it, I believe some doctors use it as a catch-all for anyone who poops a lot.  I think there are people out there who believe they have IBS but really have celiac disease, and what’s happening to them in the meantime is that their health may be deteriorating.

Authors of the position statment also noted screening should be considered in all patients with Down syndrome, unexplained iron deficiency anemia, autoimmune hepatitis and primary biliary cirrhosis (liver disease).

The position statement also says if the blood work for celiac comes back negative when the patient still has clinical symptoms and /or family history, further investigation ( like HLA genotyping and biopsy) may be necessary.

The statement goes on stress that the longer doctors wait to diagnose celiac disease, the higher the risk of osteoporosis, anemia, and even increased mortality with malignancy especially non-Hodgkin’s lymphoma.  Authors state mortality of NHL increases when the diagnosis of celiac is delayed by more than 10 years.

Tracking the celiac patient

Information in the position statement and Technical Review clearly state the importance of primary doctors following up with patients who must move into a gluten-free lifestyle.  Both to support the patient’s success with the diet, but to assist in the overall health of the patient.

The Technical Review stated “adherence to a gluten free diet reduces the risk of non-Hodgkin’s lymphoma; …[even] bringing it down to that of the general population”. It also appears to resolve iron deficiency anemia.

Dr. Murray also talked about the doctor’s bedside manner when discussing the treatment of celiac disease and the change to a gluten-free lifestyle, which is highlighted in the Clinical Advisor article.  Dr. Murray recommends physicians find two good dietitians who  have an expertise in the gluten-free diet, and refer patients to them.  But he also addressed how doctors should be presenting or discussion the diet to patients, “When speaking with patients, the important thing is for the doctor to be positive, ” Dr. Murray says.  ” If he transmits the attitude, ‘I could never follow this diet,’ it sets up the patient for failure.”  Instead he recommends expressions of interest and empathy.

While this information may have a 2006 date-stamp on it for the AGA, I think it holds true for today and serves as a reminder for all of us, how crazy celiac disease is.  My brother presented with very atypical symptoms and luckily got the celiac diagnosis he needed.  It also reminds us that behind the scenes physicians and researchers like Dr. Murray are trying to get the word out about diagnosing celiac to their colleagues.

Tags: asymptomatic, celiac, diagnosis, symptoms